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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned

Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
NORD Member Organization
See RareConnect TMAU

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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Monday, August 19, 2013

Reaching our first fundraising goal!

See Orphanet link to research project

On August 5th, Karen sent us a message in a post explaining the need to fundraise to supplement the UK's Medical Research Council (MRC) grant for TMAU therapeutic research through Trinzyme. At the time, we had raised £250, and set our goal to raising at least £1,000 before Christmas 2013 to show MRC that we are a united, proactive international community committed to finding a cure.

I am happy to say that as of this morning, August 19th, we have raised,

£694.65GBP = $1,086.92/USD
(at today's rate of exchange)!

At this rate, we will reach our goal for December ahead of time. I am proud of our community for coming forward with enthusiasm to pursue this research, so that sufferers will have a treatment that will effectively control odor symptoms for sufferers. Please keep your donations coming. The more we are able to raise, the less funding we will need from investors who will then be looking to make a profit off our community. Let's keep the cost of this therapeutic down, so that all sufferers around the world and all future generations can have access to it.


Best Wishes, Maria and Karen

Your currency will be automatically converted to USD or GBP by PayPal.
Option: pay with your credit card instead of PayPal account by clicking on either Donate button above.

María de la Torre
Founder and Executive Director

A Public Charity (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization 


Anonymous said...

can we get mebo for trinzyme project UK TMAU Therapeutic Research full address and postal code or bank account number to send some money Thanks><

Aug 20, 2013, 2:14:00 PM
Maria de la Torre said...


I need to call HSBC, the bank in the UK where MEBO has its business accounts, to find out which would be the best way to collect donations and grants that would be deposited directly to an account specifically established for the MRC grant funded Trinzyme TMAU Therapeutic Research Project.

MEBO has three deposit bank accounts with HSBC, one for British Pound Sterling (GBP), another for Euros (EUR), and another for U.S. Dollars (USD) currencies. Since donations will be made from different countries in the world, I would like to discuss with the bank to see if there is a way it can be directly deposited into these accounts, while at the same time, protecting MEBO from scammers who may end up doing unauthorized business under MEBO’s identity.

I believe that banks have programs for this, but I also suspect that they are costly. I really wouldn’t want the funds donated to go towards costly administrative expenses as these if at all possible. There probably will be a cost, but I want to try to find the lowest cost and most effective method. I hesitate to jump into any program for this without guidance from professionals that are experts in the British banking and legal system.

Another idea is to establish a Trust specifically for Trinzyme taking advantage of these multicurrency MEBO Business Bank accounts to minimize currency exchange fees wherever possible.

I believe that we desperately need PRO-BONO legal services to assist us in this endeavor. Would anyone know of a solicitor in England who would like to assist us with this? It would be greatly appreciated.

Meanwhile, I will contact HSBC to discuss this further with them.

Aug 20, 2013, 5:58:00 PM
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